Monday, December 17, 2012

It’s been near seven weeks since the treatment failed. I've been hearing lots of good news regarding prospective treatments.

While I’m changing up my diet to include more liver healthy
foods, I've added supplements to encourage my overall health. And most
importantly I’m keeping to a healthy daily exercise schedule.

I've gone through all of this shit to get my numbers down from
nine million, I’d like to keep it low in hopes that my liver can do some
serious regeneration.

Along that note, the last four weeks have been a unique
trial. I suspected there would be lingering symptoms from the treatment but I had
no idea that some would worsen.

The other day, when I was drying off from a shower I noticed
some long hairs. I assumed that my cat sat on my warm laundry again, and
dismissed it. As each day would pass I noticed more and more hair, sometimes
even when running my fingers through it. I had recently gotten a haircut, so
again I thought little of it. But as the weeks progressed I noticed it wasn't stopping, by four weeks time I’d begun to notice my hair was seriously
thinning. To date, the thinning hasn't stopped, in fact I've noticed my hair
thinning everywhere. If the trend continues I’ll be completely hairless in a
years time. I do not look forward to this, it sounds very cold.

My skin took began to get drier and drier, in patches. The more anything came
in contact with my skin the more likely it was to dry up and get brittle.
Constant lotion for nearly a month has solved most of that issue, but it was
alarming how weak my skin had become.

My vision is still readjusting, my eyes get tired easily and I've become more prone to headaches. I can’t take anything for the pain, if
only to ensure my liver has minimal medications to deal with.

The best new thing about my compromised immune system is my
inability to process food properly. I am now apparently allergic to spinach.
Depending upon the time of day, if I drink milk, eat meat, or even some greens
it causes me immense pain. Increased, and random, sensitivity to air
particulates that some days at work, I just sit there and wait for it all to
stop before I can get back to what I was doing. There have also been…serious
colonic distress issues.

Some of it may have been as a direct result of constant food
poisoning, but it has a lot to do with my body’s current state, compromised
immune system and the medication slowly dissipating.

I’m sure some of you are wondering, constant food poisoning? Yes, the colonic distress
has been such an issue that I sought medical advice, and that was their
conclusion.

Doc: …Did you eat anything unusual prior to the event?
Me: I had a really good burrito.

Doc: And the second time?

Me: Was also after a burrito….

Doc: ...You may have an issue with your gallbladder... did you
eat lunch today?

Me: Yea, around eleven.

Doc: Burrito?

Me: Yeah.

Doc: It’s really a weird coincidence, but maybe you should
stay away from burritos.

But on to the good news!

There is a company here in San Diego, which does a very
unique dialysis. Currently they perform the operation in India; last I’d heard
it was around ten thousand dollars and four weeks long. Doing this would cost
me my job and around twenty five thousand out of pocket. It’s a lot of money, but if it works, it’s
worth it. Luckily, I won’t have to risk that much. Recently they've been able
to bring the time down to around a week, and they’re looking at replicating
operations in the United States soon.

My hope is that they’re operational and FDA approved in the US
by the time I can do my treatment.

The dialysis beforehand will not cure me, but it will “cleanse”
my blood, making treatment easier. If the dialysis is not FDA approved, I imagine
the cost being around twenty thousand for the week. But if improves my odds, It
must be done.

The future looks good, however far away that may be. In the
meantime it’s about staying healthy, and staying away from burritos.

Tuesday, October 30, 2012

As a whole my GI doctors don’t generally like to look at me,
if they don’t have good news. The average age of the people they see is in
their late forties, and were exposed to HCV by doing something during their
lifetime. Whereas I was born, got it, have failed treatment three times and
have worse liver damage than many of their late forty year-old patients. So it’s
not exactly easy with all of this knowledge to give me anything less than good
news.

While I appreciate the consideration of my doctors to constantly reassure me of
my resilience, sometimes they’re not always… tactful.

Doc: Normally if a person with your level of cirrhosis were
to bleed as often as you have in the last year, they’d die.

Me: Well that’s nice.

Doc: But even with that, you’re still going to need a transplant…
You’ll need to without another bleed for a year, and then we can look at a
study.

Me: I’ll do my best, Varicies will start bleeding, and I’ll
be like ‘Nah man.’

Doc: You have a really optimistic outlook despite this
horrible situation you had no control over, If I were to be in this situation I’d
probably be really angry all the time.

Me: Yea, well like you said, I’m resilient. It can’t be
helped, if I spent all my energy being angry, how would I have any left to get
better?

There is also the reality that within a few years I’ll be
due for a transplant if I can’t make some headway in the next treatment. It is
not a treatment though... it is currently an interferon free study, which has far
greater risks than an FDA certified treatment.

It was a rather depressing way to spend forty dollars. But I realized that I don’t
fight most things, I allow them to pass, so that I can pour my fight into
things I truly care about.

Friday, October 26, 2012

Sleeping last night was an adventure to say the least. Wrestling
with my unrelenting mind I could not find it within my power to fall asleep. A
little anxious for the news I would hear today, I kept my thoughts elsewhere.
Waking up more exhausted than when I went to sleep I drudged through the day,
every spare moment my eyes locked to the phone waiting…

At 2:30 I got tired of waiting, I called them to check what
was going on with my results. The nurse was away, I was assured she would
contact me with results when she reviewed them. The suspense broke me, noting
it was getting close to the end of the day at 4:00 I called again, the nurse
had yet to review the information with my doctor.

At 5:03 pm, Friday, October 26th I got the call.

She asked me how I’m doing, knowing full well the weight, the information in
her hands held, to me. Her voice dropped as I responded and she began, “the
results of your lab work still show that it’s detectable.” She apologized as if
she had some measure of control. So as not to needlessly inject tonight, i pushed for an answer, as my
doctor agreed, I stopped treatment.
Four months after i started this..
The treatment has failed.

While I know there is a treatment in the future now, one
without interferon, I must go a year without an episode. Something I've yet to
be able to do, As I consistently have had bleeds since being diagnosed with
Esophageal Varicies.

The future’s sky seems a little less bright, but that’s no reason to give up
the fight.

I've spent the last four months putting myself through all
kinds of hell, I've lost over thirty five pounds of muscle and fat on this
treatment, I’m weak, and brittle. I’m tired and my eyes lose focus of elements
right in front of me. The muscles in my hands shake violently when I strain
them, exhausted from lack of blood. I still bleed from less desirable places,
each day reminding me how ragged I've become.

But now I must rebuild, as I have done before, I must focus myself on who I am
and what I want from life. For it may not be a long life, but it will be
bright, joyful, and filled with love and laughter.

Sunday, October 21, 2012

While the treatment warps my memories, and throws my emotions in to chaos, my body has decided that the physical pain from the side effects of the treatment are not enough.

My esophageal varicies are at it again, i have no idea how or even why any more. Last month i was hospitalized for a bleed, i had an endoscopy performed, two weeks later i had another with no bleeding and everything looked fine.

and yet, here i sit, a week later finding myself in a similar situation to near a month ago.

It's like a time bomb, with no visible timer, it just ticks. Taunting me, reminding me that soon they'll pop and when i'm not attentive enough, i won't be able to react. I fear the treatment is worsening my varicies.

The problem is that now they'll need to up my RX for my beta blockers to combat the varicies, which means if i am allowed to remain on treatment i will have so little energy a full workday will not even be possible, let alone even driving there.

If this latest bleeding episode turns out to be more varicies, there is a high likelihood that i will be forced to stop treatment, regardless the viral load.

So soon i will depart for my seaside villa in La Jolla, also known as the hospital.

Saturday, October 13, 2012

I despise the scheduling department, for so many reasons.
But here is yet another one; I had an appointment for Tuesday in the afternoon
after work with my doc. Apparently no one thought to contact me until two days
prior to my appointment to notify the appointment at the close facility was
unavailable due to my doctor not being in that week. So instead they moved the
appointment at a facility much farther away, to a different doctor two days
later in the middle of the busiest day of the week. My 11:00 was more like an
11:45, which I had to talk a half day off work to drive out there to.

So not only did I have to wait two more days to figure out
the mess the first scheduler handed me by telling me to stop all meds. But now
it was the worst possible scenario for the continuation of my treatment,
because it was with the busiest doctor.

So I went to work early, and left to go to the doc. After
about twenty minutes of waiting my negative competent nurse came out to talk
with me. I still have no idea why; she told me it was the busiest day at that
my doctor would be a while. After two minutes of saying nothing of note she
returned to bowels of the GI department. So I picked up my lovely Crohn’s
disease pamphlet and continued to reread it until I would see the doctor at a
little after noon. Ready to explain the shituation of a non-medical
professional calling me to tell me I should stop my meds and to fight for
staying another month he examined my numbers. Surprised I was functioning,
considering the fact that I’d injected post severe bleed and my now very
apparent anemia, he explained my numbers are all border line. Since I’d successfully
injected and my viral load had not zeroed out it was a cacophony of confusion.
Prepared for the worst, I listened as he explained there is a new treatment
that is interferon free so long as I can go a year without an incident. After
going over more numbers we came to the conclusion that I would continue the
treatment for another month, but If I couldn't zero out then, that I would need
to stop. It was a mix of news, but the perpetual state of limbo I’m in seems to
keep dropping the poll closer to the ground and limiting my potential for
success.

Excited for the prospect of a new treatment and another
month, I left in good spirits. That night I celebrated the “News?” with some of
my best friends. We went to a hidden bar, and I paid with two dollar bills, the
night was a release from so much of the tension and insanity of dealing with
rapidly growing incompetence of ancillary staff.

With 14 injections done, I've come too far to give up. I
know I've got a long road ahead of me and my body struggles along the path that’s
been set. But luckily I am surrounded by support from all my friends and
family. Some of the biggest surprises come from friends who I've not spoken
with in years, and co-workers who've been following what’s going on as best
they can. Everyone’s love, concern, and hope helps fuel the fire within to
fight for what I’m doing. If I haven’t said thank you enough, I truly feel your
encouragement, prayers and support have helped push me through those harder
moments. Thank you all so much :-)

Friday, October 5, 2012

I received a call today from not my doctor, not my nurse,
but rather the scheduler to talk about two things. The first is that I’m going
to need to see my doc ( I have an appointment next Tuesday, apparently someone
was supposed to call to reschedule, which no one did besides her.)

The second, is a full stop. Because of my bleed last week
and hospitalization, I am to stop treatment all together.

My numbers notwithstanding as I just took the test with
viral load yesterday, I am to stop the treatment that will stop this bleeding
that will stop me dying from this, that will allow me to live a near normal
life.

I am to stop, with no information indicative to me that this
is failing. No evidence, no data, nothing but the word of a secretary.

FUCK.

THAT.

I will be continuing this treatment until I am convinced
otherwise that I must stop.

I didn't spend the last three months in hell to hear this
from some stranger on the phone.

There are too many emotions swirling around right now for me
to truly encapsulate how enraged, saddened and disgusted I am by this.

But thanks to the emotional enhancement of my treatment,
there sure as hell is a lot of rage.

Another lovely twist of it, is that I have to keep my blood
pressure down.

Wednesday, September 26, 2012

For your convenience a glossary of terms is located at the bottom of this blog

As the weekend came to a close, I kept noticing black stool[i]
which was unnerving but only a major concern if I happens multiple times. This
is the case for me, because I bleed often. As previously stated I was exhausted
this weekend, and a lack of blood will do that do you. The stool and tiredness
continued into Monday morning so I packed up an overnight bag and had my dad
drive me to Urgent care. After explaining my situation they dropped by about an
hour later to start hooking me up with IVs and a heart monitor.

My right arm was set up, and everyone was pretty calm about
the whole thing… until I asked for a barf bag.

Within a manner of moments the taste of popcorn filled my mouth as a
fountain of blood spewed forth to the unprepared receptacle. It turns out, when
you vomit blood, shit gets serious, fast. Within five minutes, I had an 16 gauge[ii]
in my left arm, and more heart stickers for the next heart monitor. The paramedics
were right and ready to go, they threw me on a yellow mat to make sure if I vomited
again, I would make a mess of things. The most interesting part of all of this
is that somehow…somewhere the idea that I have C.DIFF[iii]
came into play.

Which required everyone to wear protective gowns and gloves,
I just assumed it was because I was bleeding profusely and have Hep C. In
either case, upon arriving at the ER I expelled the remaining contents of my stomach;
there was…a lot…of blood. As I was wheeled over I was introduced to my ER
nurses. Wait, I want to say something here… my ridiculously hot ER nurses. They
began the transfusion and gave me some things for the pain. At this point it
gets really hazy; they transferred me to the ICU, and as the number of drugs in
my system increased, they performed the upper endoscopy[iv].
During the endoscopy they found six bleeders, which resulted in six bands[v].
Every time I swallow I feel the tension against the bands. I was lucky enough
to have another excellent nurse in the ICU, and in all my time at hospitals she
was by far the best.

Recovery the next day was a blur of sleep and pain
medication, my concept of time here is completely garbled. The next nurse on my
final morning was unfortunate, besides being late, mixing up my drugs, leaving
the door open and locking the bed so I was stuck in the upright position, I think
the only part I liked about dealing with her was leaving.

I’m glad to be home now, it was a hell of an ordeal, and I get
to go back in two weeks and have another upper endo, hopefully, without the
blood loss this time. J

[i] Black
stool is poop that contains a large amount of blood, typically denoting
bleeding from the GI tract.

[ii] The
gauge denotes the thickness of the needle, the higher the number; the smaller
the needle, 16 is typical for transfusion.

[iii]
C Diff is this nasty bacteria that resides in your colon and messes with your
colon and stomach if you don’t naturally have it.

[iv]
Upper endoscopy is when they fill the stomach with “air” use a camera and tool to
cruise down the esophagus and correct any bleeders.

[v]
Bands are tiny little elastic bands that deteriorate over time, and are
attached to bleeding varacies, they basically tie them off causing them to fall
and regrow properly.

Sunday, September 23, 2012

So my last two injections went fine when I broke flesh, but
post injection seems to be another story.

Last week’s injection bruised within a day, and has only
recently stopped expanding. Since that injection, the ribovirin cough has returned
with a vengeance. Fueled by the unusual weather my nose has started over
producing mucus.

After this last injection however my mucus is mostly filled with
blood, my eyes have become bloodshot and the headaches are getting worse. The injection
this last Friday was the worst I’ve had, as I went through and through a larger
capillary. The bruising started almost
instantly and will rival its partner on my opposite leg.

My energy levels have
dropped dramatically, and I spent six more hours sleeping this Saturday than I did
the last. I have no physical rashes, and yet it feels like I’m itching
underneath my skin. The typical liver pain has been enhanced further and seemingly every muscle in my body is lobbying for president of annoying the shit out of
me right now. As everything I do hurts, any amount of prolonged pressure
inflicts a dull ambient pain around that area. This causes me to shift my
position constantly, rivaling perhaps a small child with ADHD.

I made the mistake of easing up on my physical routine
because I was too tired, I’m going to pick it back up again and hope it addresses
some of the issues. I can’t sit here and do nothing. I’m tired of waiting and
having no control over the outcome, I will seize this. I will take what I’ve
worked and endured for, and I will not back down. Tom Petty knows what I’m
talkin’ bout.

Only two weeks left of the Incivek, so thankfully in a month
or so many of my symptoms should disappear.
I’ve still got 31 weeks left over all…. I’ve done 11 Injections this
round. I’ve almost through one of hard
parts, the second hill comes
after 30 weeks because of the damage dealt to the injection sites.

Wednesday, September 19, 2012

So now, I present…. Three odd statements that are joined by the conclusion!
Enjoy.

Knowing the difference between less than
and negative.

I didn’t understand how someone could confuse to two terms, because <43 is
not -43. While technically -43 <43… that’s not really what we’re talking
about here… The symbol for subtraction – is also referred to as less than, if
you think back to when you’re a kid and you were in lower grades K through 4th,
the sentence would read: “Four less than Six is Two.” Which would of course be
6-4=2 Hence a confusion between the
terminology of less than and negative…

The other night I was having a conversation with a friend, explaining that I’d
been showing great results with this treatment, he joked that I would probably
go negative at the rate I was going…

Today I received a phone call from by nurse… I was expecting a call from my
doctor, which meant that this wouldn’t be stellar news if it were coming from
an intermediary. She called to tell me the results I’ve been waiting nearly two
weeks for. She explained that the results showed progress, but the virus is not
undetectable. She then told me my viral load…. Negative 43. I asked her what
that meant… her response was “-43 is not undetectable, you have -43.” To which I
rephrased myself “What does the negative forty three mean, is it better than
zeroing out?” She again explained “-43
is not undetectable, you have -43.” Realizing this was going nowhere I headed
back to work.

Trying to make sense of it I talked with my mom, as she’d
gone through this before. As she went through her paperwork I recalled a Less
Than 43 Viral load that mom had maintained for six months before eventually
being expelled from the treatment as it wasn’t working. The idea behind less
than 43 is the number is so low it’s practically undetectable, but it’s still
detectable. I put two and two together and realized that is what my nurse meant…
less than 43.

This means I have one more blood test to take which shows
that I’ve zeroed out, or I’m off the treatment. While it’s great news that I’m
so close, I know what my mom went through. She could have ended the failed
treatment six months prior but continued on in hopes that the less than 43
would transform into a zero.

Thankfully, my nurse said I’m moving to monthly blood tests
which I can extrapolate to mean I have two more chances instead of one to zero
out…

Overall I’m not sure what all of this means, but it doesn’t give me the warm-fuzzies
by any stretch of the imagination. What I do know is I’ve got a hell of a fight
ahead, and it’s the only fight I care to win right now.

Friday, September 7, 2012

I’m going to start up with the videos again next week; I’ve
taken a bit of a hiatus from them due to a Nutella accident. I accidently smeared
Nutella on the camera lens, and then forgot about it for a week. Future me can
deal with cleaning that.

This Thursday I had my blood draw which will determine if I hit
that magic zero. Luckily the math is on my side, nine million in four weeks… I should
be able to knock out those last two hundred and twenty. Needless to say I’m
looking forward to the results on Tuesday. Although… I suspect that the phlebotomist
who drew my blood this week not only gave me that lovely rips-your-skin-off medical
tape instead of CoBand, but didn’t draw for my viral load. Thankfully I only do
these every other week now as the hypersensitivity makes blood draws a pain for
three or four days following.

A wild symptom appeared! This one is just plain wonky, I was
told gum sensitivity will become an issue, but on some teeth my gums have
recessed one to two millimeters… With my hair continuing to thin, if my teeth
fall out to boot, I’m going to buy an old pick up, a coon dog, and start
quoting Larry the cable guy.

On the up side I’ve had a lot more energy! I’ve been able to do two to three things
during the week in addition to work. I’m hoping the trend continues, although
how Interferon will hit me each week is hard to predict. On a similar note,
this treatment causes muscle wasting and because I eat so much more fat now,
puts me at a disadvantage in terms of staying fit. But much to my delight, because
of my exercise routine, and my diet I’ve been able to lose about twenty five
pounds (mostly fat) in the last three months. I’ve also put on some more muscle
weight thanks to replacing the donuts and cookies with cashews, eggs, peanuts
and milk.

With my ninth injection over tonight, I have
thirty nine weeks remaining. I’m about nineteen percent of the way there.

Monday, September 3, 2012

This weekend brought a little more adventure than I was
prepared for. In terms of my treatment I learned a few key points.

-take the correct amount of pills, 20 minutes after 20g of
fat, otherwise… you’re gonna have a bad time.

This brings me to the key mistakes I made this weekend that
brought a little more adventure than I’d have preferred. On Friday night I accidently
look an additional Incivek, which is the ‘irritates the hell out of your colon’
pill, this made the next about twenty hours a balancing act. And by balancing I
mean taking lots of Metamucil and drinking more water than normal to minimize
the pain. You’d think that the next morning when I took one less, that it would
figure itself out… Nope. Not these pills, these ones are jerks.

Another key element to the pills is the 20g of fat, and
waiting 20 min. This Monday morning I apparently decided that waiting is for suckas. A
manner of minute or so after eating some of my fat requirement, I took my pills
with milk.

(The neat thing about taking Propanalol with milk is that it
dissolves faster than it does when taking it with water. It tastes like
slapping your tongue with a freshly caught albacore. My face quickly explained the terrible mistake I’d made to any nearby.)

Within about five minutes after taking my meds I had
flashbacks to when I first started this treatment. And now everything tastes
like its coated in a metallic milk… This treatment is so weird.

The treatment also has deeper psychological ramifications.
The challenge of the treatment is election, because I have to look at my pills,
and syringe, and know that what I’m about to do is hurt myself. Yes, in the
long run it’s worth it. But right now, the very idea that each time I prick
myself with a needle, it’s going to feel like I punched myself in the leg for a
few weeks, and each week stack the bruises. On top every other symptom. The
reality that I elect to cause this pain drives strange emotions which are in
turn amplified by the treatment itself.

In the long run, it’ll be worth it. J But for now it’s about
struggling through it.

ALSO!!!!

i'd like to say thank you to those who joined in and took a shot with me on the 31st! I have a good mess of pictures and video. :) Thank you all for your ever growing love and support!

Tuesday, August 28, 2012

A manner of weeks ago I had my ultrasound, which if you
haven’t had one is just a weird experience. It’s only painful if your tech
forgets that she’s pressing the sensor into your cirrhotic swollen liver, shoving
it against your ribcage. Or maybe something similar, like they used cold gel or
something. After this lovely stay at the Women’s imaging center I then had my
first MRI….which would soon be followed by my second MRI. Apparently I didn’t
score so well on the contrast part of the compare/contrast section on the first
test, so they let me study for a week (so nice of them) and then I took the
test again. The second one was important because it more than made up for the
first test, as the contrast went just right. The results of the test would tell
me if after this year of hell, I would have plan for the reality of liver
cancer.

This would not be a happy result, definitely going to give
that a D-, it’s not an F because as long as it’s isolated it’s not a total
death sentence.

So flash forward *wooshing sounds* to today. I received
a call from my doctor’s office at an unusually reasonable time, and this was
the message: “Your MRI results came out clean.” Which means my liver is just
scarred and really, really screwed up….but I already knew that, so woohoo! I’m
certain with my medical history cancer and I will have our fight someday… but
it is not today, and for that I sleep a little easier tonight.

Monday, August 20, 2012

When you first hear the world shattering news that your life
has been cut short, it’s strangely freeing. I can’t say it’s freeing in a good
way in every sense, it’s more like detachment. There are situations where that
detachment comes in handy. For a thirteen year old it’s odd, I didn't have weeks,
months, or a year, I had around twenty or so, good years at least. This idea
that my life was half the length it should be propelled me to action where
otherwise I might sit and do nothing. Simply because I was detached, I acted
with reckless abandon not really concerned for consequence. Because at the end
of the day no punishment, no consequence would hold a candle to death. On the
other side of the coin, the detachment made me feel constantly isolated and
alone, no matter the friends I had or what I did. This detachment was only one
of the twists that would pull my mind and warp reality.

Another larger factor
was time. Time is relative and to me minutes feel like hours, days like weeks,
often it’s been a boon, but most of the time it’s simply nothing. Reason being;
others do not live on the same time, most people live at a regular pace. In a
world where instant communication is the standard this creates confusing
messages. While in person I can pace my mind and topics fairly well, without
the nonverbal cues in an instant setting, I’m already three tangents ahead. So
conversation becomes fragmented, confusing and often I come off a dullard. This
compounded that detachment, if only because it built anger and frustration
towards those close to me. In time I’ve learned to understand and properly deal
with the emotions.

This distortion of time and detachment propelled me to be
far less inhibited, so there is truth to the phrase. But the idea of living
without regret, to live like you’re dying, to love with passion and honesty, to
fight for what you believe in, and do something beyond yourself. It’s great for
a movie script, but when you’re ten years into it, and you start to feel like
you’re dying the tune starts to carry some unwanted vibrato. People feel sorry
for you, and distance themselves from you, a heavy weight built itself around
me in this time, and I carry it still.

In my relationships, I fell fast and hard, in my friendships I open
myself completely, and will give and do whatever they may need, in my
hardships, I’ve fought with tenacity, and failed often, but never would that
stop me for long. These ideas sound romantic, but in life, the favor is seldom
returned as reciprocity falls short of the ideal. I’ve learned that people will
disappoint, and it’s worsened by the eternity of seconds manifested by my
mental time distortion. But I’ve also learned to just continue with what I do;
regardless, because those who don’t disappoint are amazing. Those intense
sometimes, instant relationships are part and parcel to the movie script, so
there are elements of “Live like you are dying” within my reality of it. But I
feel like this treatment will allow me to shed that movie cliché, and will be
more freeing and tie closer to the intent of the phrase than it ever did upon
diagnosis.

Wednesday, August 15, 2012

My treatment has a handful of different numbers that
indicate my progress. Chief among them is my viral load, a terrifying and
confusing number.

When I was in High school, my viral load was around three
hundred thousand, as I left high school it picked up to around a million. For a
frame of reference, a viral load of around the high teens to twenty million
means one of the following is imminent: transplant, treatment or death.
Although I did know a man who defied the odds at forty four million, he immediately
went on treatment because doctors indicated to him, that at those numbers his
hepatitis could cause his liver to fail within months.

With that in mind, my first two treatments in early 2008,
and late 2009/early 2010 had my numbers near three million. Each test would
yield little change between my counts; in fact both times my numbers were
slightly higher. I managed to keep my numbers stable until 2011, when I had my
episode of esophageal varicies. I was given a MELD score of 13, which would
shuffle between 11 and 15 as I completed all of the prep work for a liver
transplant prior to treatment. With all
of this in play, I still had no clue what my last viral load was since my last
treatment. I recently found out I’d shot up to a little above nine million
prior to treatment. The blood test I took on Thursday was to track that number.

On this treatment if I don’t zero out(no traceable viral
load) during the first three months, I fail and stop treatment. My number at
the beginning, was over 9,000,000, my current viral load is 220. I had to listen
to the doctor’s message a few times just to make sure she didn’t say “it’s down
220.”

This not only means that the treatment is working, but that I’m
going to zero out soon, and within a month I’ll be non-communicable. I won’t be
cured just yet, I’ve still got forty five weeks left, but it means for the
first time in my life I can look forward past my forties.

Sunday, August 5, 2012

There is something few of you will ever know, and I pray you
never feel it yourself. It is when
something about you so bothers another person, that when the look at you, they
are afraid for their life.

There is a look of fear that I’ve inspired within others
since I found out I had HepC. It’s not a pleasant look, and it’s nothing I can
control. Some people have it, and others do not. The first time I really came
across it was when I was a senior in high school. It was where I’d least
expected, in a hospital room, a newer nurse drawing my blood, looked at me with
fear in her eyes as she spoke as few words as possible.

I’ve rarely come across the look, and when I do, I explain and
educate, but sometimes it is knowledge that’s the problem. At the end of the
day, I pose a risk, by choosing to be near me, you risk exposure you otherwise
would avoid. While I know, and live with the idea and fear that I may unknowingly
infect someone else, albeit transference isn’t exactly easy, it hurts to be
actively reminded of this fact.

While I’m aware it’s unintentional, and I know it’s not me
they’re afraid of, but rather the virus and the danger it poses. At the end of
the day, until I’m through this treatment, it’s a part of me. I take it
personally, when I see that look in someone’s eyes, when I hear the ignorance
and fear in their words.

I have many acquaintances, whom I’m sure would be good friends
if not for the virus. But I’m glad the barrier exists, because at the end of
the day I’m left with friends who care no matter the risks.

This post is in a way dedicated to my friends, without whom
this treatment would be impossible. I long for the day I can have a drink with
all of you, for all that it means.

Friday, August 3, 2012

I starting filming, initially, and i lost connection, and during all this chaos i rocketed out my guts into the bowl via the express-lane that incivek has built in my colon.

So unfortunately, you only have the aftermath.

In either case BLAMO Injection number four, putting me in week four of forty eight.

Next week i find out some results, and the week following i find out my viral load, and then i find out what all this shit on my liver means.

lots of new questions...and weeks for answers... but in the mean time, let the anemia kick in.

My level of exhaustion is at a point where exercise can help overcome it a bit, where diet and my attitude still has an effect, so here goes to hoping it stays this way.

Last needle of the box!

The moved ultrasounds over here, this won't be awkward at all... thankfully Torbad came with me (my car wouldn't start so he graciously gave me lift), so two men walking into this center...seems like a good place to pick up chicks....

Friday, July 27, 2012

Whoa ten minutes....a little longer than i'd thought...but then again it's hard to keep a thought going in a sentence. If you haven't noticed i don't edit the footage, it's raw for better or worse.

one of the big misunderstandings about Hep C usually is regarding not only transfer but also the types of people who get it. A big misunderstanding about the virus is association, It's a general assumption that most people with the virus are drug addicts, felons, or other society deviants.

I mean, i'm freakin' weird, but i got it through vertical transfer, through my mother. Who most likely got it when she worked in the medical industry back in the 70s.

And of course the big misconception: transference. Hep C is Blood to Blood ONLY. which means the only way it's an STD is if you're having some bloody sex on both parts.

Monday, July 23, 2012

The second injection was more challenging than the first but
nothing unexpected. As the weekend has passed, it went better than expected,
except the ass pain.

I have a hard time finding the words to perfectly convey
exactly what this ass pain feels like, but it never stops. It does get muffled by other
symptoms, this weekend I was especially tired and lightheaded. Under normal
circumstances I would have suspected I was bleeding internally, but I’m on
treatment so anemia is to be expected. Well… apparently in the cornucopia of
things I consume in the morning and evening I forgot the one that lowers my
blood pressure, thus slowing and halting the blood loss. Today I took off from
work as sick leave expecting to be practically bed-ridden, and low and behold I
pretty much am.

It’s a gentle line I have to walk with this, because if I’m
bleeding internally they have to band me (they tie off the bleeding veins in my
esophagus and let them die off) which is a painful experience in itself, let
alone now that I’m hypersensitive, additionally if the bleeding is at a
critical level (where I could die from the blood loss) pausing my treatment
could be considered…and that isn’t going to happen.

I know what some of you are thinking, “Wait, but you could
die from the blood loss.” But see… I’ve had so many cases of internal bleeding I
can tell where and if it’s manageable or not. Luckily for me the bleeding has
stopped, and I’ll just be light-headed for the next day or so.

In any case, sleep has been the biggest part of my entire weekend.

I also learned this weekend that if I don’t re-apply SPF45 every hour or so, I’m
going to burn. If I’m out in the sun for longer than ten minutes I burn.

Thursday, July 19, 2012

Okay, the pain in and around my ass right now is ridiculous. It feels like i spent an hour sandpapering my asshole and then i have a tiny fart based robot randomly applying lemon and jalapeno to remind me that the pain is still there if i forget. I have to take Metamucil now at 6am, and at 7pm on the dot, if i don't... well...Inside wants out. On a walk today i had forgotten to take my Metamucil and just took my pills, the sensations came to bubble. It was like that restless kid on a roller coaster that was at the end of the ride slowly approaching the station of my ass, rearing to leave the safety harness was barely proving itself under the circumstances and the heat, the heat were like the screams as he, trying to break free, explains his excitement for the next roller coaster, already on the horizon.

Except the train and child are a mass of hot magma, a fecal torrent of despair, and the unholy remnants of the pills burning the walls as it travels. the safety harnesses are my soon weary muscles struggling against the odds to keep in, what so obviously wants out.

TLDR; i'm installing a seat belt on my toilet, because it's gonna be a bumpy ride.

Tuesday, July 17, 2012

This is Good Idea, Bad Idea. Little things I've learned so
far about my treatment.

Good idea: Tylenol before injection.

Bad Idea: Aleve before injection.

Why? No clue. I’m no biochemist, but here’s the big
difference I’ve noticed Tylenol not only packs a faster punch it also helps the
quell the fever, while Aleve just makes you glad it’s processed in your spleen
so there’s less pain in the liver.

Good Idea: Metamucil

Bad Idea: liquid Pep-to

The run down, pun intended: So Volcanic shits are these hot
pyroclastic flows of fecal matter that erupt with only the warnings similar to
a volcano…slight swelling and brief earthquakes. The liquid pepto, while
calming the sick puffer-fish stomach, helps foster the rush. Much like a coal
mine too close agitating the mountain.

Metamucil, twice a day, erryday. Give me all of your fiber. It
makes the burning stop, and slows the flow, sometimes it’s solid!

Good Idea: Nuts and all the water

Bad Idea: not eating nuts

I’m not crazy, nuts are great. I’ve been snackin on Cashews,
a decent about of fat, and other stuff. Whatever it stops the puffer-fish
sometimes so that’s cool with me. Also water, I drink easily 200oz per day, I feel
crappy if I don’t.

The emotional side effects can be devastating when not handled properly, typically RX occurs when a subject approaches depression. The first time i did this was hard, the mood swings were massive and no one i talked to could seem to understand what was happening, i fell into a depression. Instead of RXing it i slowly worked that shit out, and came to my current understanding. This helped dramatically when the second time came around i managed to avoid a lot of stupid shit that i would have done otherwise. Emotional side effects have just started to hit me in this go around (Wed 7/18/12) rage mode has no point, it starts from something, anything and becomes this monster that if it finds anyone latches onto them and directs the feeling at them.

Monday, July 16, 2012

My first weekday on the treatment went smoother than I expected.
I managed to wake up, take my medication, and get to work at a reasonable time.
While I was slammed at work, I had come in expecting to be required to work
overtime, thankfully that wasn't the case and I was able to leave at a normal
time.

I had to watch my temper several times, as I noticed a new
symptom; pointless rage. While the last two times I noticed a drop in
testosterone, this time it feels like my testosterone levels have risen. The result:
I have to watch my mouth, or I’m going to say some really stupid things.

I've also noticed a less interesting symptom, while before
my stomach only hurt when nearing empty, instead it just hurt. The pain was
akin to how I imagine having a freaked out puffer fish in my stomach would
feel. My sides felt even more intense shots of pain throughout the day, and I could
not stop farting.

Swear to God, I’ve never had so much gas in my life. I’ve
decided to add eggs and cheese to my morning diet, so that I can stop eating
this crap for my mandatory 20g of fat. The crap I’m referring to is crumb
donuts, cinnamon rolls and PBnJs. Don’t get me wrong, I love a good PBnJ, but I’d
like to enjoy them after treatment.

I powered through work and managed to get through my first
work day on treatment.

I’m working on figuring out how I want to set up the vlog,
but I’m hoping to stream it live for ya, Friday nights from 7-8, right after my
injection.

New Symptoms: rage, more gas, puffer fish stomach, achy-breaky sides, oh and a super cool random five minute headache that comes and goes each hour and feels like someone is stabbing a random part of my brain.

Saturday night, I decided I’d be bold, and head out. After a
two hour nap and a shower I figured I’d be able to handle a little while
downtown as the worst has yet to come. While driving wasn’t a challenge (but to
my surprise) the hordes of people were an issue. My newfound hypersensitivity
played a very unfortunate role as the passersby brought the smells of the
comic-con hall out with them. I was hoping to meet up with friends but due to
communication gaffes and my spiking a fever earlier than anticipated I was only
able to meet up with one.

But all in all it was worth it. The night taught me there is
no way I can go beyond a few miles from my home at night, and I most assuredly
should not drive.

Sunday brought the return of my energy, a new metallic taste
and volcanic diarrhea. I made the most of the burst of energy by attempting my
normal workout routine, I cut my reps in half and toned down the weights but
much to my surprise I managed an hour, guitar and videogames killed my mind for
a few more hours while I debated what one thing I would do today. I knew I couldn’t
risk over doing it again with my first day of work the next day so I hung out
with a friend for a bit, Waggery (Waggery is a group of my best friends, we’ve known
each other for a long time) invited me out to Islands, but the times didn’t
work out as I’d already committed myself for the evenings events and also I hate
Islands.

The most challenging thing so far is figuring out what I can
and cannot do, because as inhibiting as the treatment is becoming, it still
allows me to be able to have one choice per day. Trying too much could drain
me, something I’m glad I realized early on.

Additionally I’m glad I was able to get in better physical
shape before the treatment this time, it’s proven to be one of the best choices
I’ve made in a while, and I’ve a good friend to thank for that. Her tenacity
against the odds has been inspirational to me, and it’s brought me to a new
goal.

Next May (2013) while I am still on treatment, I plan on
participating in the American Liver Foundation's Liver Life Walk. It’s only a 5k, but while on
treatment it may as well be a 25k. Also I want to do more than that; I want to
raise ten thousand dollars. It sounds lofty, but given the amount of time I have,
and how much I plan on hustling, I think I can do it. I’m going to piece everything together and
build the website for it come October.

Saturday, July 14, 2012

Today is Friday the 13th and while most consider
it to be an unlucky day, it’s the day I’ve chosen to start my treatment. I had originally
intended on starting months ago, but issues with insurance companies delayed my
start date until now.

Today is mostly prep, until a little before 1900, then I begin.
The treatment consists of six pills in the morning and six in the evening, they
must be taken 15-20min after eating around 20g of fat. Additionally there is a
weekly injection, while most of the time the injection is easy, occasionally
you get what my mom so lovingly calls a “gusher.” It’s when you miss the fat
and hit a vein… needless to say it hurts, and usually bruises.

Having done the treatment before I know that to expect, to a
certain degree. This treatment includes a whole new drug, and it’s one hell of
a doozey. The drug is called incivek, and has some crazy side effects including
myopathy and lots of rectal issues/anemia… it’s less than pleasant.

--this previous part was written before injection—

After the initial injection, it’s not terrible, it’s just
like the last two times, I feel very tired and a little nauseous, memory has
taught me to take a Tylenol PM prior to injection so it cushions the initial
injection.

I had intended on posting this last night, but I fell asleep
in delirious haze, as if I hadn’t slept for days.

This morning brought back memories, aches and pains all over
my body, random burning and freezing sensations, hypersensitivity, nausea, I feel
physically weak and a new symptom burning diarrhea. Pepto is not helping this cause
much.

I’ll be setting up my camera for a vlog that I intend on doing post each injection, you may even be lucky enough to watch me inject! This treatment is
not for the faint at heart, i dropped my fear of needles when I was a kid.

This weekend is also comic-con, and for the first time in 14
years, I’m not going.

I guess it would help if I explain why I’m writing this, why
I feel so strongly about it, and why I need your help to spread the word
regarding the dangers of viral hepatitis, and to promote causes that can facilitate it's eradication.

My name doesn't really matter, so call me Bonhomme. I was
born under relatively normal first born c-section circumstances, except for a
microscopic difference. I am one of the few vertical transfers, which means my
mother had Hepatitis C, and gave it to me once I was born. My brother and
father do not have it, it’s not genetic, it’s not an STD, it’s a bloodborne
pathogen which means it is transferred only through blood to blood contact.

It’s a strange virus and doesn’t affect everyone the same,
it attacks the liver, causing hepatitis (hence it’s name.) Generally speaking the virus can cause: Jaundice
(yellowing of the skin/eyes brown by the cuticles), fatigue, chirosis,
fibrosis, liver cancer, abdominal pain, dark urine/stool, loss of apetite, nausea,
vomiting. What does all of that mean? It means If you’ve got Hepatitis, you’re
gonna have a bad time.

Due to the nature of a deteriorating liver, transplants
are often necessary(it doesn’t cure the virus, just prolongs life) but even
with transplant the life expectancy is decreased. For myself I was staring at
timer that say death before fifty… now some of you medical professionals or Wikipedia
experts are going to question that, because given what I’ve said it should be
before sixty. The catch is that I have not only the hardest of the hardest to
cure types… I also have developed esophageal varicies, due to my deteriorating
liver.

I’m not the worst case of this…shituation, but I’m in that
bracket. I’m also classified as a non-responder.

What’s a non-responder? In this case it’s someone who has
not responded to treatment…. In my case it’s twice I’ve failed… so here we go
third time’s the charm! Each treatment has been progressively stronger.

So here we go, here’s to forty eight weeks of feeling
terrible, and to going from Hepatitis C to Hepatitis Free…